02/19/2026
🦈💛✨
Thank you for all the prayers and check ins today. It was quite a long and frightful day.
To set the stage, last night, Noa started having bad vomiting episodes. She went to bed at 7, woke up at 8:30 vomiting. We cleaned her up, redressed her bed, calmed her down, and that was about 10pm. About 10:30, she started vomiting again. We went through the whole process again and she finally fell asleep with the help of some phenergan around 11:45pm and slept till about 8am where the vomiting continued to happen.
At this point, Mom realized she had had 0 urine output throughout the night, and she couldn’t keep even the slightest sip of water down. Our thermometer wasn’t working properly (it kept reading 95.6, and there’s no way that was right) so we didn’t know if she was feverish. But at this point, our greatest concern was dehydration, so we called her care team and off to CHOA we went.
When we arrived they did blood work and immediately hooked her up to bags of fluids. Within the last 30 minutes of her last 2 hour fluid infusion, we finally got urine output and with the help some IV nausea meds, we finally stopped vomiting and Noa was able to sip on some water and eat some carrots and pretzels.
Now, the big question? What caused her vomiting?
Noa’s numbers came back clean. Her ANC was back into the safety zone, her hemoglobin and platelets look good, white blood cells were all in normal range, so there’s no indication of illness or infection, which is a positive! No sickness is a good thing.
It was determined that Noa’s vomiting episode was caused by a bad reaction to a preventive antibiotic she has to take every week. Lucas and I have been suspicious for some time that her antibiotic is part of her nausea issue and we’ve been trying to take measures to adjust it, but after today the decision was made to pull her off of the oral antibiotic completely, and at her next appointment she will start a once a month infusion of antibiotics. This will continue until after EOT.
It feels like a relief on one hand that it’s not an illness and after a long day in infusion, we were able to make it home and we can try to sleep in our own beds. But on the other hand, it’s frustrating that we are so close to the finish line, and this is another hiccup in the road.
This is on top of we just found out that Noa has not two more sedation appointments, but three more. There was a miscommunication somewhere regarding maintenance cycles, and we found out our baby girl has 3 more spinal taps to go before she is done.
She’s 3 years old and she’s been fighting for her life longer than she has not. 7 months seems so far away but so close at the same time.
But for now, we’re going to take it day by day, and cherish the fact that tonight, we narrowly escaped an admission to the hospital and we get to be in our own comfy beds.
Noa’s next appointment is a lumbar puncture with chemo, our new antibiotic infusion and possibly an IVIG. (We’re still waiting on her labs from today for that number.) We get another week and a half at home before we go into for another long day.
Thank you again for all the prayers and check ins today. We are so grateful for the people who rally around Noa. 💛
See a shark, say a prayer. 💛🦈✨
